I joined the ISG in October 2017 as a Trustee, taking over the treasurer role from our founder Maggie. My wife and I had attended two of the ISG family days following the birth of our baby boy Alfie in May 2013. Alfie was born with a rare skin condition known as Bullous Ichthyosiform Erythroderma, a form of Ichthyosis. This condition causes the skin to be excessively fragile, and can easily blister and peel. To compensate, the body regenerates skin faster than normal, which then causes a thick build up of skin which can crack. This can be very sore at times and Alfie's care involves a lot of baths, even more greasy creams and sometimes bandages. Despite all of this, Alfie is a VERY happy and intelligent boy, with an extremely cheeky and lovable personality. The family day was so helpful to us, especially in those early days when parents of new babies with Ichthyosis can feel quite alone. We realised that there was support out there, and that our ‘Ichthy-family’ is a wonderful community to turn to.